Up to his old tricks again

[Tina63]

My son! Sigh!! Up to his old tricks again.

I have really taken a big step back from his diabetes now, seemingly all the family (in-laws too) told me to just let him get on with it. I have pleaded my case of never forgiving myself when any complications occur, as I will see it as my own failing, but I have agreed and stepped right back from it all, of course telling my son that was my intention.

Well...... I did become increasingly aware that the new box of Lantus had remained unopened for quite some time - he has 30 units a day, so with the 2u airshots he was told to do, one pen is only going to last 9 days max. I could not remember when the last box was finished, but quite a while ago. So, I sneaked a look in his room on Saturday. His Lantus pen was below 20u. His Novorapid too was below the bottom line. I tried to shoot a little out, but it jammed, so that too was definitely finished.

On Sunday both pens still sat there untouched and unreplaced. And Monday, and Tuesday. I reminded him last night he had a meeting this morning with his DSN and dietician, and just like magic, a Lantus pen and Novorapid cartridge disappeared rapidly from the fridge and both have now been used. It seems the last few days (at least) he has been surviving on his Humilin M3 morning dose on its own (I am fairly confident he carried on using that). I knew things were not so good given how tired he became and yesterday he slept after school for 2 hours.

So, today we saw his DSN and dietician. I asked if he wanted to go in alone but he was fine with me there. I had pre-warned his DSN of what was going on. He did admit to not using his Novorapid much, saying once you 'forgot' one dose it was easy to carry on skipping the odd one. He did say he never skips his Lantus, I didn't like to challenge that as I don't want him knowing that I know! They did weigh him, and he has lost a bit of weight - doesn't tie in with his appetite - so that all points to the same thing. They also asked him if he thought his HbA1c would have come down since last clinic in February (11.2) but he said no, he expects it to have gone up! So they did take a blood sample there and then, but we will have to wait for the results.

They then asked him why he 'forgets' his Novorapid, and he has blamed school holidays again and lack of routine. I think a lot of it is just excuses myself, but I feel powerless to do anything.

They discussed various options with him, and though he is already on quite a strange combination of Humilin M3, Novorapid and Lantus, they have now come up with a plan of carrying on with the M3 at breakfast to cover his day at school, then a fixed dose of Huminin S to cover afternoon snacks and evening meal, then Lantus as normal at bedtime. At weekends though, he can revert back to Humilin M3 first thing, then Novorapid for meals later in the day if he hasn't got up until late morning, and Lantus as normal for bed and the same for school holidays too.

So now I have to head back to our GP with yet another revised list of prescription items, and in a few days start with this new routine! I wonder how long this one will lastl! Oh well, I will try and think positive!

Tina

 

[everydayupsanddowns]

So sorry to hear that Tina.

I never wnet through a denial phase so I can't really understand the motivation/though processes involved in 'forgetting' an insulin injection (or at least in not madly panicing about it once I had remembered!)

Hope the new system works. Well more than that really. I hope your son suddenly has a 'wake up' moment and realises how important his future health is (to you if not to him) and the strain you are put under by his head-in-the-sand approach.

Some insulin is better than no insulin though I guess!

 

[Caroline]

As our children get older it is increasingly difficult to stand over them and make sure they do everything they should be doing. You are a very caring mum and you are doing everythig you can to help.

 

[Northerner]

Sorry to hear this Tina Like Mike, I really can't relate to it - why make yourself poorly and take risks with your future health for the sake of a little pinprick a few times a day? It's not something I would normally advocate, but I think it's about time someone really put the frighteners on him about just how dreadful the consequences of his behaviour might be.

I hope he is able to stick to the new routine. I can't imagine how difficult all this must be for you. The frustrating thing is that diabetes is something that can be managed well so that it has little impact on your life, which couldn't be said for some other diseases, like MS or cystic fibrosis, for example.

 

[PhoebeC]

I dread to think what going on in his head. The poor thing.

I dont know what id do if it was my child. You are doing your best.

As to what you can do about it a really dont know.

How old is he?

x

 

[novorapidboi26]

Can I ask why he is on M3 as well as a fast and short acting...........?

Diabetics can survive fine on 2 shots of M3 a day, this might be acting as a back up and easy way out of taking the Novorapid. If this was removed and he was forced to use only Novorapid for meal times, he would soon realize the importance of taking the Novorapid.......as if he didn't he would soon feel it......

I think with all the other things going on for him personally, all those different insulins is madness, that's just my opinion though.........I find it hard enough trying to get things right on 2 insulins......

I hope a good regime can be found soon.........🙂

 

[imtrying]

I really can't relate to it - why make yourself poorly and take risks with your future health for the sake of a little pinprick a few times a day?

Because you don't do it to make yourself poorly...that's just a consequence of it. When some are feeling sad, fed up or have had enough of their diabetes, doing an injection is the thing you hate the most. It might only be a pin prick, but it is the reminder of what you are. So if it makes you feel c**p or not, you're still not going to take it. He also has a lot of hormones going round his body as well at the moment which doesn't help.

Tina, please don't think that it's that black and white, as I can assure you it's not. Everyone deals with things in different ways, and reacts differently to each other - we should all be aware of that.

He's clearly struggling with just being diabetic at all - I've been there, done it, got the T-shirt - but the thing that you MUST hang on to, is that at least he is talking about it. That is so so important. And I know it's hard to stand back and watch, but I can absolutely assure you, no amount of tough love would have made a difference to the choices I made at the time, as I didn't even feel like they were choices. I only turned things around because I finally decided to educate myself about the thing I will live with for the rest of my life and found this website 🙂

He will get there. And you and his diabetes team clearly all know what's going on, which is a million times better than it being hidden from everyone.

Please don't think you've failed - he'll need you to help one day, I promise.

 

[Tina63]

Can I ask why he is on M3 as well as a fast and short acting...........?

Diabetics can survive fine on 2 shots of M3 a day, this might be acting as a back up and easy way out of taking the Novorapid. If this was removed and he was forced to use only Novorapid for meal times, he would soon realize the importance of taking the Novorapid.......as if he didn't he would soon feel it......

I think with all the other things going on for him personally, all those different insulins is madness, that's just my opinion though.........I find it hard enough trying to get things right on 2 insulins......

I hope a good regime can be found soon.........🙂

Hi NRB

The only reason he is on this complete mix of insulins is to try and find something he will 'do'. He started on MDI Lantus and Novorapid, but after 6 months of fantastic control (HbA1c of 6.1 June 2011) he started skipping the odd dose of Novo at lunchtime. First of all he blamed this on exams, then school holidays, then when he went back in September was in a new form, new friends, and completely stopped doing any testing or injecting at school.

That's when the DSN suggested the M3 in the mornings to avoid any need to inject at school, but said it would perhaps be too rigid for him to have that in the evenings too, and they were keen to keep him on the Lantus to be sure at least something was going in. They decided at that point that Novorapid would be fine in the late afternoons/evenings as the M3 would have worn off.

As he has now started messing with his evening doses too (he was meant to be having a fixed dose of Novorapid straight after school, then carb counting with dinner later) they came up with this as a suggestion. Since we got in from school this afternoon he has come down to see me and just said that he actually likes the sound of this new regime! So let's hope so. I have to now wait for the GP to sort out the prescription, so it probably won't be ready until Friday or Saturday, so I don't imagine he will start on this until Monday as it won't really work on Saturday when he works from lunch until mid evening.

To be honest, I agree, it's a right mish-mash, but at the moment I would just like to see some positive progress, so am happy to go along with anything.

 

[Tina63]

I dread to think what going on in his head. The poor thing.

I dont know what id do if it was my child. You are doing your best.

As to what you can do about it a really dont know.

How old is he?

x

Hi Phoebe

He's 17, was almost 16 at diagnosis. He does seem to nice and 'normal' on the whole and is a decent, bright young man, which is what makes it all the more frustrating!

 

[Tina63]

Tina, please don't think that it's that black and white, as I can assure you it's not. Everyone deals with things in different ways, and reacts differently to each other - we should all be aware of that.

He's clearly struggling with just being diabetic at all - I've been there, done it, got the T-shirt - but the thing that you MUST hang on to, is that at least he is talking about it. That is so so important. And I know it's hard to stand back and watch, but I can absolutely assure you, no amount of tough love would have made a difference to the choices I made at the time, as I didn't even feel like they were choices. I only turned things around because I finally decided to educate myself about the thing I will live with for the rest of my life and found this website 🙂

He will get there. And you and his diabetes team clearly all know what's going on, which is a million times better than it being hidden from everyone.

Please don't think you've failed - he'll need you to help one day, I promise.

Katie,

Thanks for putting your side of it. I just fear what will happen in a few months as he will move up to adult services. He nearly got transferred at the start of this year but they decided with him being relatively newly diagnosed and all that's going on with it at the moment that they would like to keep hold of him with the adolescent team until the end of this year. I do worry what will happen then. Fingers crossed he sees the light before then though.

 

[Robster65]

Can't offer any suggestions.

Obviously really hard on you and certainly not fair but he is taking some control of his life and hopefully will incorporate the rest as and when he feels he can.

Have you tried handing the whole prescription thing over to him too?

So he has complete control of the lot. The surgery might start ringing him to find out why he hasn't collected bits then. It'll be easier just to do the proper stuff than get nagged by the nurses.🙂

Rob

 

[Tina63]

Have you tried handing the whole prescription thing over to him too?

So he has complete control of the lot. The surgery might start ringing him to find out why he hasn't collected bits then. It'll be easier just to do the proper stuff than get nagged by the nurses.🙂

Rob

Hi Rob

Yes I did also tell him on my 'handing over' that it was up to him to deal with his repeat prescriptions too, to which he replied 'well I don't know what to do.' I told him it's all online and if I could manage to fathom it he could too.

When we got this new list yesterday though, he did ask if I would take it to the surgery, so I asked him if there was anything else he needed, so he told me a couple more items too. I will remind him when it arrives though that again it's up to him to order more as and when he needs it.

Thanks for your continued support.

Tina

 

[Tina63]

It's not something I would normally advocate, but I think it's about time someone really put the frighteners on him about just how dreadful the consequences of his behaviour might be.

Sorry Alan, wasn't ignoring you intentionally! Yes, I sometimes think that would help, though our GP gave him a horror story back at the end of last year about a young female patient of his losing her sight in one eye. At that, my son started to sob into his hands, and I thought we had a breakthrough. 48 hours later though, and he was back to his old ways.

Someone said a while ago that maybe when at the adult clinic he will actually see people with amputations or nasty infected legs which may then impact on him more than the spoken word. That's the next thing I am clinging onto, though I also dread adult clinics as my impression from people on here is that they are much less frequent and don't seem half as informative. I could be wrong of course.

I have half a theory that he stopped a lot of the novorapid because he had 3 hypos in pretty quick succession after the last change of regime (incorporating a fixed dose of novo after school each day) and as hypos still freak him out I think that had something to do with it. He hadn't had one for over 6 months as he was always high, so I think they came as a bit of a shock to him and they are certainly something he hasn't got used to. I really do think that has a lot to do with him running high. The thing is, if he did test and eat more sensibly, he could bring his levels down much closer to normal, even if he did still run a bit high, and could probably still avoid a lot of hypos, just have the odd one.

 

[Pumper_Sue]

Hi Tina,
please excuse the question as it has probably been asked before. ( I have foggy brain from ME)
Has he thought about a CGM? This way he can then see what his levels are doing, Thus he needn't be afraid of going hypo as can eat when he see's the dip in his blood sugars. Hopefully this will alleviate the fear for him.

 

[Tina63]

Hi Tina,
please excuse the question as it has probably been asked before. ( I have foggy brain from ME)
Has he thought about a CGM? This way he can then see what his levels are doing, Thus he needn't be afraid of going hypo as can eat when he see's the dip in his blood sugars. Hopefully this will alleviate the fear for him.

Hi Sue

I have to say that nothing like a CGM has EVER been mentioned to him/us. As far as our team are concerned (and I have to say on the whole I think they are brilliant) they haven't even mentioned the existence of pumps! I don't know why, and the only reason I know a little about CGMs is because I have seen them mentioned on here and have then looked into a little more.

His team did pick up on the fact he wants a new iPhone 4 and have said he could get a nifty gadget to upload his BG levels onto it, to which he was suitably underwhelmed! All part of the denial bit I guess, doing that would just be acknowledging he has diabetes.

Saying I know a little about CGMs, I don't have a clue about how you get them. Do your team provide/fund them? Aren't they horrendously expensive, or am I confusing them with something else? He never wants to discuss diabetes in any way, shape or form, and as we were leaving the hospital yesterday I just started to mention a couple of things they had said and he just said that's why he dreads me going with him (though I gave him the option to go in alone) as I seem to think I can then talk about it all the way home! So to bring up the subject of CGMs or anything else come to that, would be very difficult. We have had a couple of talks over the past 18 months about pumps and I have had the very normal response of "I don't want something attached to me 24 hours a day" - end of subject! As his team have never even mentioned anything like that exists, I don't see him changing his mind. Perhaps if they showed him one and really went to town on the benefits of one, he might be tempted. I understand round here they aren't given to adults anyway, my neighbour had to change hospitals to a neighbouring county to get one. I did briefly tell my son about the 'artificial pancreas' trials I have been reading about, blaming Grandad for bringing the subject up and we did have a very brief discussion about that, at least he listened.

Interestingly too, he did actually also flick through some JDRF pamphlets which arrived the other day and I 'accidentally' left lying around - a teenage magazine with Amelia Lily from X Factor on the front seemed to catch his attention. In fact a while later when his best mate arrived, he asked if could he take it upstairs so the two of them could 'have a laugh at it together'. I do see that as positive, again, a little acknowledgement in his own way, but too embarrassed to admit it. I don't know if they did read it, and it was more about exercise than anything else, but at least I see it as a tiny step forward.

This parenting lark isn't easy at the best of times, but throw diabetes into the mix and you certainly have got your work cut out!

 

[CarolK]

Tina , every time I read your posts, it is like reading about how my son was at his age. Unfortunately I dont have any solutions, but the good news is that as he gets older Im sure he will come to terms with things himself and start conforming, but only when he is ready himself. My son is now 23 and I must admit , looking back I dont know how I got through it all! Dont get me wrong, I still worry when hes out drinking , but he is now at a stage where I have been able to relax and hand his diabetes back to him so to speak, while trusting that he will do what hes supposed to do. He still doesnt really like discussing anything diabetes related, but thats up to him. I can feel condfident that hes looking after himself. When I look back, I think that I probably never gave up nagging him on what he should be doing, and I hope that he might appreciate that in the future.